Friday, December 18, 2015


This week feels like a bad dream. I'm still waiting for someone to wake me up. 2015 was such an incredible year for our family. I would summarize it all here, but I'm pretty sure you saw the hundreds of photos I posted on Instagram. So you know. We were giving the good life. There were carefree mini vacations. There was me fulfilling my dreams of becoming a yoga teacher. There was immeasurable joy. Yes, there were more trips to Doernbecher's than we would have preferred. Yes, there were surgeries. Yes, there was bad news here and there. But I simply could not have imagined 2015 coming to an end the way it is. How are we back to the place were I am sitting by the phone, holding my breath, with time standing still, waiting for that news?

I like to sugarcoat a lot of what I write. It is one of the ways I choose joy amidst adversity. But I'm finding it really hard to sugarcoat things today. I am really upset. Just as quickly as I entered the first stage of grief, denying that any of this was actually happening, today I have woken up angry. I'm angry that I had to ignore Ezra's cries yesterday when he kept asking me for a snack on our car ride to Doernbecher's because he had to fast. I'm angry that we had to ride the elevator up to floor 10 where the oncology clinic is. I'm angry that the nurse who took the stats wasn't overly friendly when we were getting admitted. I'm angry that we didn't get to see our regular doctor. I'm angry that the doctor was condescending when I tried to tell him that some of our other NS/JMML friends have experienced these kind of setbacks. I'm angry that I had to see Ezra's blood dripping onto the floor of a hospital room again. I'm angry that it took both Josh and me to hold him down as he hysterically fought the iv therapist. I'm angry that nothing we said or did could calm him down. I'm angry that the anesthesiologist was making annoying jokes while Ezra was screaming. I'm angry that I had to stay until sedation settled in and had to watch his tiny body go limp in my arms. I'm angry that Ezra had to have a huge, hollow needle shoved into bone for the third time. I'm angry that we are re-experiencing our worst memories and our worst fears. I'm angry that all of this is happening the week before Christmas. I'm angry for not being able to sugarcoat things right now.
I'm not angry for being human, though. I am strong. I am brave. I am mostly joyful. And I am human. So I'm going to go ahead and give myself permission to be human today. I'm giving you permission to be human today too. I'm also giving you permission to walk on the other side of the street if you see me today...or to at least take everything I say with a grain (or a bucket full) of salt if our paths inevitably cross ;)
If you don't know me very well and reading this makes you feel like you should call a help line on my behalf, rest assured that I am in fact quite emotionally stable. I do not have a natural tendency to stay angry. I have a really good sense of humor and I am very quick to forgive (even myself, most of the time). I write because it is therapeutic. When I started writing this particular post I was in tears, requesting that Judah go get mama some tissues. And by the end I literally have a smile on my face - mostly because I'm amused about the number of times I used "I" in the paragraphs above. Like, get over yourself already, Elisabeth. I'm also writing this because I kind of want you to have a glimpse into the reality of what happened yesterday. When you ask how I'm doing or how it went, this is how it went. This is real life. It can't all be sugarcoated...even at Christmas. Please give me a little extra grace if I'm not smiling as much as usual or seem like a little bit of a debbie downer. Yesterday was freaking hard. I need lots of grace. Thank you in advance :)

What is a bone marrow biopsy & aspirate on a child like? More info HERE


*Originally posted 12/15/15*

You would think by now we would have this medical rollercoaster thing figured out. But there are so many twists and turns that we always seem to be one step behind the Noonan Syndrome learning curve. The last 24 hours have been crazy. Here's the summary: Ezra got sick this weekend, and after his fever held on for four days strong, we brought him in for a checkup yesterday. At that appointment we learned that his spleen was bigger than the last check up and that there were abnormal cells found in his last labs (the ones we had done at Doernbecher's a week and a half ago). There was talk that his JMML was returning. There was hysterical crying, hyperventilating, shock, fear, and all the feelings. Then logic and levelheadedness set in and we decided to wait to hear from oncology before jumping to any conclusions. There were hours spent anxiously waiting by the phone today. There was *the* phone call from our oncologist (who we thought we said goodbye to for good over a year and a half ago). Here's the gist: she's not freaking out but she's concerned and she wants to get us in for a bone marrow biopsy as soon as possible which turns out is this Thursday. It could be a fluke, it could be a virus, it could be leukemia. There's part of me that is in disbelief that I am even typing this right now. There's another part of me that always knew something like this could be a possibility (a very remote, nightmarish, and worst case scenario possibility, but a possibility nonetheless). There is no precedent or protocol for JMML returning after remission in an NS patient that we or our oncologist are aware of - I have spent a good part of the day reaching out to my Noonan Syndrome family and emailing and getting the ball rolling to contact other oncologists who have had NS/JMML patients.

We are holding on to the hope that this is just another *weird NS thing* that we will have to deal with and NOT cancer. We ask that you hold onto that hope as well and that you would please pray that we can keep our heads straight until Thursday. We are devastated to even think about Ezra having to undergo this procedure (for the the third time), or to even have to walk into that oncology clinic again as a patient - but we've we survived all of this before. We've come out on the other side stronger, and braver, and better...and we know we can do that again. Ezra is a fighter and this is merely a bump in the road. Please pray for him and send lots of love his way - especially this Thursday morning!!

Thursday, November 19, 2015


I've been Instagram-ing only a fraction of the time I've been blogging, but it is definitely my preferred form of social media these days. A lot of times you might just get stuck with pictures of my lunch (I have a slight obsession with Caprese salad) or my passion for Baptiste Yoga, but the one and only Ezra is definitely a focus, along with the other lights of my life, Josh and Judah. This blog isn't going away, but my posts are few and far between these days and you'll definitely be missing out on some seriously cute Ezra updates if you don't join me there: @elisabethparker

Ezra has glasses now!

On Instagram 10/26/15:

So many of Ezra's health issues still bring a scare from time to time. Like the other day at his well baby checkup when his doctor found that his spleen was a bit enlarged. But we are done with cancer. So we're not going to give that a second thought. There are so many things that *just happen* with a spleen being a little big every now and then. So what!

Right now we're focusing on this AMAZING little human saying things like, "I do it!" as he tries, with absolutely zero fear, to walk down the stairs even though he can't fully reach the railing.

There were days early on that it was hard to trust the senior Noonan Syndrome parents who said, "Don't worry, they just do things in their own time. He'll crawl. He'll walk. He'll grow. He'll talk. He'll _____." To see it all unfolding before our's amazing. It's amazing for any parent to witness their child reaching these milestones, typically developing or not. But what we are witnessing with Ezra is nothing short of miraculous. To see our prayers and hopes and dreams being answered with this sassy little thing taking off his pants and running (not walking) up to us and saying things like, "Haha, I naked." It is miraculous. Seeing those chubby little legs and a whopping 23 pounds on the scale (*almost* putting us on a standard weight chart)...what!? Miraculous. 

Ezra, we'd prefer you keep your pants on, but we are SO stinkin proud of you. Our hearts are overflowing.

An Ode to Caprese...I wasn't kidding about my obsession

Completed my Baptiste Kids Yoga Teacher Training program in September!

Friday, July 31, 2015


And because I like to keep things real, the weekend of the symposium wasn't all sunshine and rainbows...and pink cotton candy clouds. (Can you believe this sunset, though!? This picture was taken from the glass elevator of our hotel on our last night in Seattle).
I never thought twice about going to the symposium. It was in Seattle afterall, which is just a hop skip and a jump from where we are (plus a 6.5 hour drive on a Friday during rush hour, turns out). And what a wonderful opportunity. The chance to meet Noonan Syndrome experts AND Rick Guidotti, wow! But I never thought about what would happen after I got to the symposium. Like it never even crossed my mind. I was hopeful that I would meet other families with kiddos affected by NS and maybe some adults as well, but I didn't think about how I would feel about that other than happy.

Well, happy wasn't the only feeling I felt. Let me first explain that along with the RASopathies Symposium, there were also the CFC and Costello Family Conferences happening at the same time. CFC and Costello are also RASopathies syndromes, but they have many more outwardly physical symptoms than Noonan Syndrome. I've seen photos of people affected by all the RASopathies online...but this was my first time seeing these faces in person. And it was hard. Hard as in I practically had to run to the bathroom to keep from bursting into tears when I first stepped into the hotel. Even now I'm embarrassed by my reaction to seeing these uniquely beautiful kids in person. There is so much guilt that goes along with the fact that Ezra is only mildly physically affected...and the fact that things (although many have been excruciatingly hard so far) could be much, much worse. I'm still not sure how to process these feelings. They're the same feelings that come up when I'm reminded of our leukemia journey and how much worse it could have been. This stuff is HARD. And it just doesn't go away. "Easy" cancer journey guilt / not-as-severe-of-a-
syndrome guilt is an almost everyday occurrence.
There was also this realization over the weekend that for us and these other families, this was how we were spending some of our precious "vacation" days. And that this is our life from here on out. Like okay, if we want to be informed, and if we want to make these important connections with our genetic condition community, a large portion of our vacation days and spare change will be spent on these types of conferences for the rest of Ezra's life. And that's not a bad thing, but it's not a "normal"'s not what most families picture when they're planning their much anticipated vacations. And what does this mean for Judah? How are these types of "vacations" going to shape who he is and how he feels about his brother?? Well, I'm hopeful that they will fill him with compassion and a greater capacity to appreciate his brother and those who are "different." Still, it's a crazy thing to be pondering about our five and two-year-olds' futures.

And perhaps the hardest realization of the weekend was this: some of the adults we met who are affected by NS, although vibrant and wonderful and capable, have spent their entire lives being bullied because they look different. They deal with constant pain and anxiety and depression. And while that might not be the story for every person who has Noonan Syndrome, it's not the first time I've heard this...and it is overwhelming to think about this kind of future for Ezra. It is heartbreaking to hear that on top of all the medical issues, all the surgeries and procedures, there might still be these underlying issues that there just aren't answers for.

I don't want to end on a gloomy note, because that's not my thing either, so I just want to reiterate how thankful we were for this symposium...hard-to-feel-feelings and tough realizations included. We are so thankful to live in a time when there are so many medical advancements and a greater understanding of genetic differences. We're thankful to the doctors who aren't content with unanswered questions. We're thankful for people who look beyond the diagnosis and beyond traditional definitions of beauty to see our son and these people as the miraculously beautiful and amazing individuals they are.

And although it's not always easy, we are looking forward to the good stuff that lies ahead of us on this journey. We are committed to continually expanding our knowledge. We are
committed to sharing our knowledge. And we are excited to see how our hearts and our perspectives on what is "normal" and "beautiful" shifts and changes and grows along the way.

Thursday, July 30, 2015


A couple weeks ago we had the privilege of attending the 4th International RASopathies Symposium in Seattle. (The RASopathies are a group of rare genetic conditions caused by mutations in genes of the Ras-MAPK pathway. Noonan Syndrome is one of these rare genetic conditions).

The first night of the scientific symposium was a poster session where Ezra was quite literally a poster child for Noonan Syndrome. We proudly stood by this beautiful poster that was put together by the RASopathies Network (a compilation of our photos and text) to answer people's questions about our NS journey with Ezra. We had the opportunity to talk at length with a reporter who is writing a book on advancements in genetic testing and how those advancements are helping to improve the quality of life for the individuals affected.

We also had the opportunity to meet Lisa Schill, Vice President of the RASopathies Network (pictured above on the left with her adorable son Max who has NS), who is one of my heroes. The tireless work and advocacy this woman is doing for the Noonan Syndrome community is unprecedented and I am so thankful for all that she does to make the future brighter for Ezra and his friends. We were also blessed to meet Milena (pictured on the right) and her family. Their son Brycen has NS and he and Ezra had an immediate (and adorable) connection when they met for the first time:

Judah and Lisa's son Max were fast friends too:

This was our family's first opportunity to attend an event about NS. And other than meeting our sweet little girlfriend, Andi, who lives in a neighboring town earlier this year, we had never met another child or adult who is affected by NS (in person). It was such a privilege to meet Max, Brycen, and Landon....and some beautiful women with NS including Becca, Michelle, and Judith (who is busy getting her PhD by the way!).

For the first time we also got to speak with NS EXPERTS! Ezra has been the first patient with NS for many of his doctors, so it was such a blessing to be able to ask questions to doctors who have spent years with multiple NS patients and who have devoted their careers to learning more about Noonan Syndrome and how to best care for the wide spectrum of issues it causes.

And if there weren't already enough highlights from the weekend, Ezra also had the honor of being photographed by this award winning former fashion photographer and phenomenal human being, Rick Guidotti, who has spent the last fifteen years of his career challenging traditional definitions of beauty and empowering those with genetic difference through his stunning photography and newly released and highly acclaimed documentary film, "On Beauty." Please, please take a minute to listen to Rick's TED talk or read/watch more about the film. We cannot wait to see the photos he took of Ezra and hope our paths cross again soon!

Sunday, May 17, 2015


I'm only about a month late with this birthday post, so I'll just have to repost what I wrote on Instagram on 04/20/15:

If the first year was for worry and tears, the second year was for celebration and laughter...our "year of jubilee," as we fondly called it :) It's not that every day was easy, but when you have cancer and then don't, every day is just a bit sweeter. There are more appointments, more surgeries, and more obstacles on the horizon, but we are choosing joy and bravery...and you'd better believe that we will continue celebrating every chance we get! Happy birthday to our sweet and sassy, funny and fickle, tiny and tenacious baby bro. We love you, Squish! Two looks good on you!

We had a great time celebrating Ezra's birthday the following weekend. Last year, we were still trying to make it through flu season without any major setbacks for his health, so it was a family only party. But this year we got to invite all the baby friends and it was so fun! "Come one, come all! A person's a person, no matter how small!"

A person's a person no matter how small...thank you for celebrating with me, I hope you had a ball!

Friday, March 6, 2015


Today was a Doernbecher's day. We have been going up there for nearly two years now. We know the fastest route to drive, which parking spots are best, which bathrooms are the cleanest, the quietest and most comfortable places to nurse, the check-in routine for about eight different specialists, the best places to sit on the three different floors we frequent. We know the days of the week and times of day that are the busiest. We know that we will see something that breaks our heart every single visit. We know that we will see people just like us who have this routine down to a science. We will see parents who are new to this, with fear on their faces or blissfully unaware of the days to come. But as many times as we've had these days, and even though we've been doing them for almost two years, there is a part of it that still feels so foreign. Judah is healthy. Josh is healthy. I am healthy. My pregnancy with Ezra was healthy...with perfect blood tests, perfect blood pressure, clear ultrasounds, no causes for concern. And yet this sweet little person came into our lives who isn't so healthy. He has the tiniest smudge on his copy of DNA.

It's hard to wrap our head around it at times. We did nothing wrong. Ezra did nothing wrong. He is fearfully and wonderfully made. And yet here we are. This is our life now. This is his life. A life of surgeries and tests and check-ups and therapies. A life that is so foreign to families who have been blessed with healthy children. I forget sometimes that we are not one of those families anymore. We are still tremendously blessed, but the reality is, we have been forever changed. Forever inducted into this other world. A world that we're trying to navigate as gracefully as possible. Sometimes we will make mistakes, I'm sure. We will share too much about our journey or maybe not enough. We will miss opportunities to educate others or go overboard at times that aren't appropriate. We will inundate your newsfeeds during awareness months but fail to speak up when you use the 'r' word or other hurtful language. We will struggle at times to celebrate your child's good health because we are simultaneously mourning Ezra's pain or challenges.

But we will figure this all out, one day at a time. And what will make us even braver going forward, is knowing you've got Ezra's back. Knowing that you will continue to take the time to *like* our Noonan Syndrome and childhood cancer and rare disease posts to show your solidarity...even for the hundredth time. That you will embrace this new information, that you will start to normalize it in everyday conversations. That you will think about ways to talk to your kids when they start to notice how small Ezra is. That you will accept him, and us, with all of our flaws, however foreign our situation might be to yours. That is my hope today, at the end of this Doernbecher's day. Thank you for reading this post, our FORTIETH Ezra post. That right there is the kind of solidarity I'm talking thank you :) We are so grateful for you coming alongside us on this journey we embarked upon nearly two years ago and for your continued prayers, support, and love.

Tuesday, January 13, 2015


Since I became Ezra's mama, I'm afraid I've become a bit of an oversharer. So I debated whether or not to share more about this wonderful thing that happened to me last week. I kind of wanted to keep it all to myself. But I have this tugging at my heart that I should share more.

Let me start at the beginning for anyone who is reading this blog for the first time. Our second son Ezra was born in April 2013. He has a longer medical history than many of us will have our entire lives. After many grueling months with no answers, he was diagnosed with Juvenile Myelomonocytic Leukemia (JMML) and later Noonan Syndrome. Amidst the chaos of his first year, running to and from the children's hospital and being housebound for eight months to protect his fragile immune system, I never lost the baby weight, and overnight (it seemed), it was replaced with unhealthy weight (by way of sadness, worry, stress, and so.many.sleepless.nights). You see, the parents of sick children spend every waking hour (and often all hours of the night) keeping their children alive. They become their doctors and nurses away from the hospital. They take on jobs and roles they never imagined. Sleep, let alone any time to care for themselves, is simply a luxury they do not have. This was my story. I was nursing Ezra every hour in small amounts so that he would not throw up everything because his spleen was so enlarged it left no room in his tiny body for his stomach. I was administering medications via tube five times a day, spaced out in such a way that there was no wiggle room, no margin for error. I was cleaning up toxic chemo puke and poo around the clock. I was unable to sleep at night because of the beeps and sounds from the feeding pump that hung on an IV pole right next to our bed where our sweet little Ezra slept propped up in a rocker so he would not choke in his sleep. I could go on, and I'm sad to say our family had it easy in comparison to other families I have come to know and love. But the point is, the thought of me being away from our sweet boy for more than half an hour at a time was laughable. The thought of me expelling any energy or attention to anything besides caring for my children, preposterous. Exercise, what!? It just wasn't possible.

After Ezra got healthier, after his leukemia was considered in remission, I still carried the extra pounds with me. I was SO embarrassed about the state of my body, I started loathing leaving the house, even though I was overjoyed that I finally had the freedom to do so. I was so ashamed, so uncomfortable in my own skin, I didn't know how to face the outside world again. I cringed every time someone posted a picture of me on Facebook...I even had to ask for some of those pictures to be taken down because I couldn't handle it. I just wanted to give everyone who saw me a disclaimer that I looked the way I did because of all that my family had been through in the past year.

But, about 4 months ago, I said enough is enough. I mustered up all the courage I could and I took a leap of faith. I was inspired by the health and fitness of my dear friend Lindsay who had been faithfully practicing yoga, even throughout the entirety of her pregnancy, and I said "Hey, can I come with you to yoga?"

While I still don't recognize myself in the mirror most days, and still have many pounds to lose before I get to a place that feels healthy again, yoga has helped me to give myself some grace. It has shown me how strong I am and how much possibility lies ahead of me. It has empowered me and challenged me. It has energized me and brought me peace. It has been so many things that have been such a blessing to me after such a hard time in my life.

About a month into my yoga journey, this past October, we found ourselves up at the children's hospital with Ezra once again. Between pre-op and surgery the next day, I needed a moment to give my anxious heart a break, so I headed to Lululemon with my mom to look at yoga mats. When the employees there asked if we were out having a mother-daughter shopping day, I laughed and said no...and somehow, by the time I got up to the register to make my purchase, they had learned enough about sweet Ezra that they decided they wanted to do something nice for me. They gave me one of the mats I had been looking at. As in, here you go, we don't know you, but we want you to have this awesome mat, free of charge. I was blown away by their generosity and as soon as things settled down after surgery I wrote them a thank you note. I was loving my new mat and also wanted to tell them more about my amazing yoga teacher, Melinda, and how thankful I was to be her student.

Fast forward to last week, the beginning of January, when a lovely handwritten note arrives in the mail from Lululemon, explaining how a few weeks back, they had the opportunity to meet my yoga teacher and that she was just as lovely in person as I described in my letter. They said that they had been thinking about Ezra and my family, and that in the spirit of the season, they wanted to do something else for me. They gifted me with me six months of yoga classes. SIX months. I'm still teary with joy.


I am so blessed to be Ezra's mom. And I would be his nurse again in a heartbeat. But I am incredibly grateful for the place he's at right now. I am grateful that I can focus a little bit on taking better care of myself so that I can better care for him, and be present for my oldest son Judah, my husband Josh, and all the people I love in my life. I am so grateful that my friend Lindsay let me tag along with her to yoga that first time and for her support along the way. I am grateful for Melinda, and Nicole, and Jen, and Jessica (and Robin and Veronica at barre3) for being so welcoming and encouraging from the second I stepped into their classes. I'm grateful for Rachel, Ashley, Natasha, Kelly, Cynthia, Janine and all my friends and family who have encouraged me as I have embarked on this journey to take some time for myself and to better my health. I'm thankful to Lululemon for giving me these incredibly generous gifts - I feel so blessed.

It is hard for mamas like me to overcome the trials of the past...and sometimes even harder to ponder the trials of the future for a child who has had so many odds stacked against him. But small acts of kindness truly make a world of difference. They make yesterday and tomorrow just a little bit easier.

Think about what you can do this week to bring some sunshine to someone who might be in the middle of a storm. A random act of kindness, or maybe just a smile and a little extra might just be the rainbow they desperately need to see.